Wednesday, April 22, 2009

I wrote this entry early on the morning of Monday April 13. When I wrote this, Pablo had been in CHLA for 12 days. He got out of the hospital around noon that day.

It's the only post I've never finished or published. My rule is that I don't edit my writing, and I write straight through, publish and walk away. If I did it any other way, I'd still be writing a post from July. On April 13, there was a computer glitch when I went to upload what I'd written. I thought the entire post was lost, so I never published it. Turns out half the writing was lost. But some of the good stuff re-appeared in my drafts folder.

This evening, when I sat down to write about the day's events, I saw went back and re-read this post, much of which is about faith. It jumped out at me. We talked a LOT today about faith. So, for the first time, I'm serving up leftovers on the Pablog.

And here they are:

This may not be the most uplifting post. But it does involve hope. Like, we hope that this is Pablo's final hospitalization. We hope that we can get our lives back to normal, with our home as the center of the family. We hope that Grady no longer has to go away to his dad's house for long periods of time, like he has for the past two weeks. We hope that our family home can become a place of nurturing, quiet and fun once again.

Most significantly, we hope that Pablo's cancer does not recur.There it is. I haven't written those words up to now. Or maybe I have and it just feels real today?There it is: the scary, woolly, blazing truth: we have a single, deep, real hope for Pablo in this life.

We hope that his cancer does not come back.Baseball? Grades? Punctuality? Observant of household rules? Sure. But our greatest hope is the other, greater, thing.Jo Ann and Grady and I, and our family, and you, our worldwide family of friends, have a giant hurdle ahead:We have to let go—soon—and let Pablo gravitate back to his spot in life. He has missed what would have been his year of kindergarten. So what? He's gained so much more. He has blossomed and he has become our best friend. And what a best friend he is. He wakes up happy and keeps us laughing, he's always hungry, and he loves all our favorite songs.

Pablo's life, and our lives, have taken an unexpected path. But we'd never call it a diversion, or a wrong turn. It's just the cards that the universe dealt us. We can bitch about it and spit in the eye of God. Or we can inhale, exhale, inhale and get with the rhythm of life and abandon the false notion that we are the actors, director and stage technician in the play of life.

In my acceptance of where we are, I am visualizing Pablo's sixth birthday party on June 21. I am visualizing Pablo asking me to go out and ride bikes. I am visualizing Pablo being an angst-addled teenager. I am visualizing Pablo arguing with me about which Fitzgerald short story is the best, and which ones he simply phoned in for the paycheck. In my mind's eye, I can see Pablo pushing me away and pulling me back in as his heart and his volatile young emotions surge and swing within. And I can see the smile on his mother's face as he illustrates the art of Being.

This visualization is one sliver of faith in action. Faith is what you fall back on when you run out of moves. That sentence came into my head and out of my mouth at my brother Scott's memorial in 2004. At that time I did not anticipate my life carrying me to a situation more appropriate for that statement than the one that lead me to standing next to my brother's open casket. But my life has brought me back to that question. And here we are.

So whether you believe in a religious God (Jo Ann does), or the general concept of a universal God (I do), or you are agnostic, or you choose not to make a choice, today is a day when faith comes into play. For us it does. As Pablo leaves CHLA for what we hope will be his final long-term stay, we will give up the certainty of facts (there are none)and we will jump headlong into a place where grace and balance play the central roles in life. Insistence and control are outlawed in the place we're heading to.

At dinner on Sunday (April 12), Jo Ann and I began to share our feelings about the current in-patient stint. We don't actually have a lot of time to connect and speak because we are either changing shifts at CHLA, the off-duty person eagerly exiting, or I am breezing into P's room to say good morning on my way to the office or good night on my way to bed.

Our conversation veered into how much we cannot stand being at CHLA anymore. Everything about it is grating on us. The 800 mile walk from the parking lot to the elevators. The guy at the front desk who never remembers who anybody is, even though even other person who does his job is on a first name basis with us. Having roommates. The TVs are botched and the audio monitors crackle like AM radios. It's not CHLA's fault. We're just ready to be done. 11 months is a long time. At least when you live in a college dorm and have no personal boundaries, you get to go home for the holidays and spring break. We haven't had a break. Or a kegger. Or—OK, I better stop there.

10 comments:

Anonymous
said...

Jeff,

I laughed (iCoffin with a digital headstone) & cried some more, imagining our family in your family's place. Up late since Brian is out of town. I am insisting on a Miracle for Pablo-I just won't create space for anything else. I share your vision of Pablo as a teen; with long and wonderful friendships, happiness, & love. We have faith. We will hold onto that.

Thanks for posting that. I have thought a lot about you, Pablo and the rest of your family today. I pray that all the good thoughts and prayers that I and so many people are sending out are giving you the hope you need in what may feel like your darkest hours.

"Learn from yesterday, live for today, hope for tomorrow" Albert Einstein

I have no special words of advice. There is no right or wrong way to react to the news you have just received about your precious Pablo... All I can say is that I am following that "Beacon of Hope" that you mentioned in the previous post.

You both are amazing parents. Your love is true, and it is clearly evident that Pablo feels it through that vibrant smile of his. I admire your strength and tenacity and endurance. You're doing a remarkable job.

"Faith is being sure if what we hope for and certain of what we do not see."~Hebrews 11:1

All I have right now is the the absolute faith and unbridled hope that Pablo will dictate this road that lies before you all and with that,his amazing spirit,courage and tenacity for life WILL win out.There are no other options here for me.My unwavering belief in that will be what sustains me as I process the inexplicable.My love to you.My arms reaching across our short distance of separation.Enfolding you in my arms,wishing I could lift this from you all.Remember,it is a short distance and I will be there in a moments notice if you need me.Peace and strength my friends,that is my prayers for this day.Could also arrange some Xanax Jo Ann if need be.Kidding but also totally serious.Kisses to my magical boy.

When I was falling asleep last night, I was thinking of Pablo, and your family, and was also visualizing Pablo as a teenager, and an older man...keep your faith, and don't be afraid to hope...advice from my friend who is going through her own life/cancer struggle, is that she doesn't let the thoughts of failure in...says she literally has no time for it...if she comes to a dead end...she turns around and goes back to the road that will take her someplace new...maybe there is a new place besides CHLA that can give you new hope...there is so much out there...I don't know enough about Pablo's condition to know how many avenues you've already searched...but I hope you can find a new path to take him on that helps him and builds his strength and heals him...I hope all of you can find that path.

since i read shell shocked yesterday afternoon i have not been able to stop thinking about you and joann and grady and polly and sweet pablo. i've cried, i've asked why and then cried some more. each time i found myself with a spare moment i was asking God for a miracle, for peace, for joy, for FUN for your family.

Dear Jo Ann, Jeff, Grady Pablo,I Have nothing but love you. Faith can move mountains and together we will walk this path we're on.If I can do anything it's pray and I beleive in miracles. So today,love your lil son as you always have and always will. We are with you. Not just now but always...